Should endometriosis take this long to diagnose?

Endometriosis is a condition where tissue like the lining of the womb grows in other places, such as the ovaries and fallopian tubes. This can cause severe pain, including painful periods and painful sex, as well as health problems such as infertility.

It mainly affects women, around 1.5 million women in the UK, but it can also affect intersex, transgender, and genderfluid people. In some rare cases, cisgender men and infants have been diagnosed with endometriosis. The condition mainly affects people who are menstruating and doesn’t normally occur after the menopause.

1 in 10 women experience endometriosis during their reproductive years. It can have a severe impact on their quality of life and getting a diagnosis can be a long difficult process. Research has shown that on average, it takes 7.5 years between the patients seeing their doctor with symptoms and finally receiving a diagnosis.

It takes a long time because the symptoms and severity of the symptoms differ for each person. Some people don’t get any symptoms, while others will get all or just some symptoms. Common symptoms include feeling tired all the time, pain when going to the toilet, blood in your stool, painful sex, pelvic pain, heavy periods, severe period pain. These symptoms are similar to other conditions, therefore doctors need to rule out other causes of the symptoms first.

The only way to diagnose endometriosis conclusively is to have a laparoscopy. This is where a surgeon inserts a small camera into the pelvis through a small cut near the navel. If the surgeon finds the endometrium tissue, it can be treated then and there. Alternatively, a sample can be removed for testing. Lack of awareness among medical professionals and wider population contributes to a longer diagnosis.

To get a faster diagnosis, keep a symptoms diary. This can help you note down when the symptoms occur and how severe they are. This will help your doctor spot patterns and it will ensure that you don’t forget any details. Symptoms of endometriosis may be seen as taboo subjects to talk about but try to share as much information as possible. It is important to break the stigma and talk about it in lots of detail with your doctor. It is recommended to book a double appointment to give yourself more time to discuss your symptoms. Remember you can ask to be referred to a specialist, as endometriosis can only be diagnosed by a laparoscopy, which must be carried out by a gynaecologist.

There is currently no cure to endometriosis. However, treatments like anti-inflammatory painkillers and hormone treatments are available to manage symptoms. This is because some hormone treatments are designed to slow the growth of endometriosis. None of these therapies get rid of the disease, they can only reduce the severity of the symptoms in a proportion of patients but not all. Surgery is the only way to remove endometriosis growths. It is commonly performed as laparoscopic (keyhole) surgery. In severe cases, open surgery may be required. When superficial or deep endometriosis is identified in your pelvis during your laparoscopy, thermal energy can be applied on the spots of endometriosis to evaporate them, this is called ablation surgery. If endometriosis is deep in the tissues, this method may fail to treat it. That is when excision surgery could be more effective. This is when the areas are cut out and the specimens are sent to the laboratory to confirm the presence of endometriosis. Although surgery can remove endometrial growths, it is not a cure. Sadly, endometriosis can return, and more than half of women who undergo surgery, need to have a second procedure.

Organyc supports The Endometriosis Foundation – a not-for-profit organisation dedicated to raising awareness of Endometriosis, providing trusted and transparent information, education, and support. Their mission is to create a future where endometriosis is recognised and understood a future where everybody with endometriosis receives the care and support they deserve. The Endometriosis Foundation officially launched on 7th March at The Place of Westminster, London, where Organyc donated samples and leaflets for their goody bags provided that day. They will also be taking part in The Fertility Show, Olympia 20-21st May 2023, where they will also be sharing goody bags with our samples and leaflets in them. Due to lack of research, the link between fertility and endometriosis is not fully understood. However, it is estimated that endometriosis is the cause of half of women experiencing fertility problems, so we are privileged to be a part of such an important event.